Involving the public in designing trials and setting research agendas

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Setting and implementing health research priorities is a complex and sometimes obscure process. Although the aim should be that the views of all stakeholders are considered, with few exceptions (notably the Childbirth and AIDS advocacy movements), patients and consumers have little input to how research is prioritized, funded and monitored [41].

Despite the progressive attitude of organizations such as the Cochrane Collaboration (see Section 11.10), where lay participation is fostered at all levels [42], involving consumers in designing trials and reviews is still seen by some as a hindrance to progress. It has been suggested that lay input to the design of trials is an intrusion that compromises scientific integrity. Yet, there are examples where lay involvement has helped researchers to address important clinical questions. For example, it was the mother of a woman with vaginal adenocarcinoma who first suggested that this could have been caused by the diethylstilbestrol that the mother had been prescribed during pregnancy [43]. It has also been suggested that patients might be more willing to take part in trials if they knew that there had been lay or advocate involvement in the design, as they would be reassured that the questions posed would address their needs and that their interests had been represented [34].

To help encourage researchers to involve lay input at all stages of clinical research, a concerted effort to systematically collect and collate evidence of situations where lay input has improved research proposals or defined new proposals would be extremely useful. Encouragingly, a national survey of UK Clinical Trial Coordinating Centres, carried out in 1999/2000, found that most centres had involved or were planning to involve consumers in their work, and less than a quarter had no plans to do so [44]. Almost a third of trials covered by the survey (19/60) had consumer representation on the Trial Steering Committees (though none were involved in data monitoring). Consumer input was mostly at the level of single trials and largely related to preparing information for patients. This type of representation is typical of UK cancer trials, conducted during the 1980s and 1990s. Individual consumer representatives or groups were usually involved in the development of individual protocols, or as members of advisory committees [45]. Although valuable, with this approach there is the risk that lay representatives become isolated or intimidated, perhaps because they do not have adequate training to allow them to participate fully in technical discussions. Providing specialized training is an area where researchers and advocate/support groups can work together towards enabling informed consumer input to clinical research. A pioneering example of this type of approach is project LEAD (Leadership Education and Advocacy Development). This is a 5-day basic science and leadership training programme for breast cancer advocates, that is organized by the US National Breast Cancer Coalition (http://www.natlbcc.org), and aims to give individuals the training that they need to participate more fully in breast cancer research [42].

Until fairly recently, few cancer research organizations have sought public input at the policy level. However, in the mid-1990s, the US National Cancer Institute (NCI) recognized the need to take a more global view. It took the lead in implementing a policy to include the views of consumers at the highest levels, through the creation of the Directors Consumer Liaison Group - a model that is being used and adapted internationally.

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